All about Xeloda
Comments
-
Wandering, I had a dosage reduction about six months after starting Xeloda due to hfs, going from 3000 mg daily to 2000 mg daily, seven days on, seven days off. Instead of taking three pills in the morning and three pills in the evening, I now take two and two. I’ve had scans since then and so far stable.
0 -
This is all good information. I have only done 7 days so far. I’m on a 7/7 schedule. I start back again Monday. I’m on 3,000 mg. to start. Can anyone tell me when their hand and foot started once they began the medication? I’m almost anticipating it.
0 -
wandering, my timing and dosage experience has been the same as Divines. I’ve been on Xeloda since Jan 2019 and essentially stable. I don’t clearly recall when my HNF started, but I believed it was within the first month or 6 weeks of starting treatment. Mine tends to remain at Stage 2 HNF, but I’ll take that for stability. Good luck to all
0 -
KBL, I don't really recall at what point mine started, but I remember it was very mild at first. Then it steadily got worse until my hands were painful and it really became necessary to back the dosage down.
I wanted to make a correction, tho, because I looked back at my doctor visit summaries. I went 9 months (not 6) taking X at the higher dose and then was cut back to the lower amount.
0 -
Thank you, Divine. I’m hoping I am going to keep having weeks like the first one. I’ve even had more energy. I’m glad the lower dose is better for you.
0 -
KBL-I do't know if I told you this. But I fund that foods high in folic acid have been the reason for over 3 1/2 years of foot problems.
Since I have avoided those foods, my feet are only pink and dry. NO infections anymore for over 6 months!!!
0 -
Denny123, awesome. I have to say my diet is not great, so I don’t eat of lot of food with folic acid to begin with. I guess that’s good now. Thank you.
0 -
KBL...well that might be a good thing. We ARE allowed to eat junk food since there's no folic acid in it. LOL
0 -
I eat almost all of the high folic acid foods daily or at least weekly (except liver and beetroot) but haven’t had HFS, perhaps that’s due to luck orbiology, similarly to how we all respond differently to the same treatments. So far, nightly lotion has worked well for over a year but who knows really. I wish you luck with minimal SE’s.
0 -
Thank you, Mae. I thought maybe you didn’t have it because I hadn’t heard you mention it.
I did read on Lobular Breast Cancer Alliance that most people who get it develop it in the first cycle. If only that were true, I could say yay! I know that’s not always the case.
I eat plenty of junk food, mostly because it sits okay in my stomach and I haven’t been able to keep my weight up because of my stomach mets.
0 -
illi-lucky you! If eaten in moderation, folic acid foods are okay. But my huge spinach and avocado salads are what finally made me see the light. I always ate mostly veggies with my dinners.
I called my specialty pharmacy yesterday to ask if I could cut my Centrum vitamins in half to reduce the folic acid amount from those. She insisted that I don't need vitamins. I have taken them all of my life since I thought that I needed them. My onc also said that I don't need them.
So I guess that I will quit taking them while on Xeloda. Also, if my CT scan in a month shows that I still have possible liver mets, I will be asking for an increase to 3,000 a day. That is the max that my onc will prescribe for anyone.
0 -
Just to chip in, I began on 3500mg per day and was floored completely with SEs including HFS. 3 reductions and a shortening of time scales took me to 10 days on 11 off and dosage of 2600mg per day and I had very few SEs but also small progression in my pleura and fluid in my lung. I suggested to MO that maybe I just wasn’t getting enough so we switched it up to same daily dosage but over 14 days with 7 off. 3 cycles of this in - Scan this week and I have SEs which are not great but manageable. We’ll see…..
0 -
Karen- I wonder if the 11 days off is the issue ? Wonder about 7/7? My MO said increasing the dose after it has already been working at the lower dose rarely helps with a progression- but, doesn’t hurt to try that.
My MO wanted to do 14/14 when my ANC would tank- but, that long time off worried me- she hadn’t done any 7/7 regimens until me. She was trying to save me going to the lab every 2 weeks- but, I prefer that to 14 days off.
0 -
I am starting my second week tomorrow. I’ve had seven days on and seven days off so far. My doc said they find far fewer SEs on that routine and do it with everyone.
I have been putting lotion on my feet every night. I am on my last day off and just noticed a crack on the ball of my right foot. Ooof! I didn’t feel it until I was touching my foot and felt it. Now to keep an eye.
0 -
KBL- I wwould put Bacitracin and a band-aid on the crack. I wear Aquaphor on hands ans feet at night with silicone socks and food service gloves. It keeps my feet and hands soft to prevent cracks.
0 -
Just got some info on a technique for applying Aquafor since it is very greasy and putting socks on, or gloves. just absorbs some of the ointment. My brother, a doc, told me to use a damp wash cloth and massage the ointment into my hands, and or feet. That has worked for me when I want a quicker method for it to be absorbed into my skin. Anyone have suggestions for cuticles that become dry? I've been using lip ointments like chapped stick.
0 -
Hello, I am scheduled to start this medication due to residual cells sometime in December. My nurse said the drug has been around a long time. I hope you all are tolerating it well.
0 -
Thank you, Denny123. I will purchase some now.
HopeHeal, I’m only on my second week, so I’m not much help at this point. I hope you tolerate it well.
0 -
Denny: I ordered some silicone socks today. Can they be worn all the time? If so, should I wear regular cotton socks over them?
0 -
I order the silicone socks from eBay. The US sellers ship much quicker than the China sellers. I also buy the silicone toe covers (like ballerinas wear), to keep from poking my toes through the socks.
So every night I lather my feet with Aquaphor, put on the toe covers, then the silicone socks. And finally a pair of cotton socks to hold them all on.
They aren't too slippery so that I can do my usual 3am pee. LOL
Amazing difference to keep the feet soft.
Through the day I wear cotton socks and reapply Aquaphor often. Or, as my pharmacist suggested, I put on Aquaphor and while I am sitting here at my computer, just slip on Croc sandals. The sandals don't absorb the ointment, but I don't walk around a lot with them. But since I sell online, I sit at my computer for hours so the ointment sinks in well.
0 -
Nina-There is cuticle cream that is supposed to help, but it didn't seem to. I have learned to ignore the cuticles, since when I try to push them back, I often get infections.
0 -
My feet issues really got going three cycles in. To be fair, I am a hot bath junkie, so that may have sped things up. I am managing this side effect ok but my feet still hurt ... not crying hurt, more like annoying. I need a good foot massage 😁
0 -
Has anyone else here been on Xeloda and Faslodex at the same time? I switched from Ibrance and Letrozole, and they put me on Faslodex and Xeloda. Thank you.
0 -
I had Faslodex when I had Kadcyla. I hated those shots, and when Kadcyla stopped working, I happily stopped the shots. But some ladies have survived for several years on only those shots and nothing else.
0 -
Denny123, it seems not too many do Xeloda and Faslodex. I've had two rounds so far two weeks apart. I am okay with them at this point. I don't feel as bad as I did on Letrozole. Hopefully the pill version is not too far off in the future.
0 -
KBL- I just read up on it and it is interesting that it is for Her2- women. So I don't know why I got it.
Hope that it works well for you!
0 -
Oh, gosh, Denny123, that is odd. I’m glad you aren’t anymore. Thank you.
0 -
We don't know what I am now. Originally Her2+++ but when Kadcyla stopped working, Foundation One testing showed that I had changed to Her2- Somatic.
Any recurrence has to be biopsied, but if my possible liver mets prove to be actual mets, I don't know what will happen. My 3 biopsies of my liver in 2004 failed to show metasis.
0 -
Denny123, this crap is hard enough when it first happens. That it then changes is just so confusing and complicated.
0 -
KBL- Interesting, a Xeloda and Faslodex combo. Since I had progression after Ibrance/Faslodex combo (NED lasted 4 years) it was thought I shouldn't have either anymore. I've been through all the AI's but I will ask my doc if adding one I've been on before might be beneficial with Xeloda. I am not HR+, or have mets to the bone, so I'm curious if anyone else out there has Xeloda with an anti-hormonal?
0
